Thursday, May 8, 2014

I can remember being as little as 5 and what it felt like to be in a room of extreme feelings and total silence. Palpable loss and grief, but yet no words. After my brother died, our life was often lived appearing to be "normal." I am not sure what it should have looked like. I guess one would picture everything black, bleak and lots of crying. But, in fact, that wasn't so. Life was life. My sister and I bickered and exchanged deals between the vents in our rooms after arguing; debating who would admit they were wrong and apologize to appease our parents and relinquish the punishment of "go to your rooms!". We ate dinner and often complained about my mom's latest health food creation. I often stared at a weathered board on the wall in our kitchen that started with the words..."give us this day...". I never knew what exactly that meant, yet another underlying theme in a silently chaotic environment. Silent chaos, seems like an oxymoron, but often fits perfectly. Sometimes life is so painful and tragedy so deep, there aren't any words.

There is something about the phrase, "I don't know how you do it" that gets me everytime I hear it. It never quite sits right with me. How do any of us do anything after a sudden loss, tradgedy or unexpected event in our lives? There is no handbook. The fact of the matter is, from a very young age I knew loss. I knew pain. I knew tradgedy. I knew that it doesn't look any different then "normal." In fact, in most families, in some way or another, it is normal.

I have been struggling lately with silent chaos. I am not a religious person. However, spiritual yes, I do believe that we all have a purpouse and life gifts and it is our responsiblity to find them and use them for the betterment in the world. I do belive that all of us have lessons to learn and our daily behaviors increase or decrease those lessons. I don't know why, how or where I learned or believe these things, I just do. Can't really explain it. Something in me, always. I think one of my lessons involves letting others in, being vulnerable, truly developing relationships that lean on each other, not just letting someone lean on me. It doesn't sound difficult, but for some reason, it's nearly impossible for me. I find myself a mess when someone does something for me and I can't immediately repay the favor. So, I have been practicing. But, this is where the tricky part comes in. How do you tell people what you are really going through? Do you send out a mass email? Call each person and deliver the news over hour long conversations, "hi, my son is having yet another surgery, what are you having for dinner?" It's tough. I don't like to be a downer, a buzz kill, a drama queen. I want to be normal.

I want so badly to not talk about the difficult part of our lives, that radiates most of my thoughts. I don't want to focus on all that we could have, when we have so much to be grateful for. I want to point out the great things the kids are doing, not focus on the never ending tantrums and surgeries. But, I also want to be real. I also want to be honest. And honestly, this shit isn't easy. I immediately follow it up in my own head with, "come on Grace, it's not that bad." It's not. It could be infinitely worse. That is true. But, it could be easier and better. That is true too. So, I guess I am learning. How to admit something is bad or difficult without losing my "normal" title. Ha. So funny what we hold so tightly to.

My sweet friend dropped off a book today, Zach Sobiech's mom wrote, "Fly a little Higher", I have been reading it since. Well, between, giving a baby a bath in one hand, book in the other. Tears streaming down my face. Nods of familiarity pulsing through my blood. Audrey asking if I had seen the "Chicken Little" book while I was reading about their finding out about Zach having cancer. They had found out and Laura diligently called every friend and family member, one by one, cancer, cancer, cancer flowing from her tounge. I thought, that is what I can't do anymore. I can't keep making the call. She then so beautifully illustrated how they all sat down that same awful day and ate dinner and chatted about life in one way or another and well, life went on. And it does. It always does. The sun still rises and sets. Breakfast still gets made. Babies still need baths. You still need to eat.

I feel always that thing when you walk by someone and you don't know their life. You don't know if they just heard the words cancer. They look normal. You don't know if that car cutting you off just found out their son died. None of us really know the silent chaos that may be happening right at this very moment.

An update on EJ. He had a brain and spinal MRI and then surgery for undecended testes, it was over 5 hours and it seemed like eternity. At the same time, it was easy. My extrordinary aunt (who is in the throws of getting her masters full time, working and doing her practicum) insisted on helping and bringing me to the hosptial at 530 AM with EJ, so Jeremy could get the kids off and meet me there later. I insisted she not do this and she insisted she did. I am so glad she did. It was nice. Nice to let someone in. She had a tougher time than I expected. Somethings, like hospital admissions and procedures you become somewhat numb to at this point. It was bizzare almost to see it through a "newcomers" eyes. It was a great distractoin once surgery began as we just chatted about all world topics, as we typically do and soon enough hours had passed and Jeremy was there.

The results of the MRI were what we were anxiously waiting for. We would have to wait through Easter weekend, which I wasn't happy about, but did provide some relief knowing it wasn't urgent. The neurosurgeon who calls herself Debbie when she calls, which really makes me love her even more; explained in detail numerous findings from the MRI. I won't bore you with all of them here. Basically, his ventricles are still enlarged and extra fluid remains on his brain, but not shunt as of now. His spine is displaying scoliosis and will need intervention, unsure of how much because of his tethered spinal cord and if we correct that, how much will that help. So, yes, that leads me to his tethered spinal cord that will need untethering, or in laymen terms, cut. Last week Jeremy was in CA for major meetings he couldn't change and well I was here with 4 kids and 3 appointments at the hospital with EJ. Jeremy's mom is literally a saint and took off of work and took Nolan to help- which it did immensely. I saw the films in person and we discussed some further bladder/kidney testing he would need prior to the surgery and set everything up. So, now we are here. His surgery scheduled for May 23. We will be there for 5 days, which in reality could be a lot worse. But, ick. I hate the hospital. Who likes it? It seems that shockingly the recovery isn't that bad, it's more the procedure and risk of complications when opening up the spinal column, but I have total faith in his doctors and staff and am confident all will be well. I just hate it. I hate seeing my baby with tubes, crying, helpless. I hate depending on others and feeling needy. I hate leaving my kids and missing another holiday weekend in the hospital. I hate appointments and arranging schedules for bad crap. I hate worrying about it, thinking about it, I hate it.

So, wow that's a lot of deep talk for a Thursday, but there it is, the good, bad and ugly. That is how we do it.